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ALLIANCE FOR HUMAN RESEARCH (AHRP)

Advance Directive Re: Research

You Have a Right to Say "Yes" or "No"

Prepare an "Advance Directive" before you enter a hospital, in the event that you become incapacitated or mentally incapable of making informed, reasoned and voluntary decisions at a future time.

The Alliance for Human Research Protection suggests that you prepare and sign an “Advance Directive” specifically stating your willingness or refusal to become a human subject of experimental research.

Suggested text of your choice:

1. ” If I become mentally incapacitated at some time in the future, I do not want to participate in any experimental research. I do not give anyone permission to consent on my behalf for experimental research.”

or,

2. “If I become mentally incompetent at some time in the future, I am willing to participate in research only if the potential direct benefit to me is substantial and the risks are minimal.”

or,

3. “If I become mentally incompetent at some time in the future, I am willing to participate in experimental research only if there is no risk of worsening my condition, and the aim of the study is to benefit me directly.”

or,

4. "If I become mentally incompetent at some time in the future, I authorize [name ] to make medical research decisions on my behalf and in my best interest.

5. “If I become mentally incompetent at some time in the future, I am willing to participate in research for the good of scientific advances that will benefit future generations.”

You can prepare this with or without a lawyer. Make & distribute copies for your family (or significant other), insurance company, and caregivers.